I am going to see my GP tomorrow. I wrote out a long list of symptoms and also info on APS. He said he was not very familiar with it, and that I would need to contact Hematologist for testing. Which makes sense. He did bring up the concept of using aspirin as an a anti platelet drug instead of warfarin as anti-coagulant.
Has anyone tried this and with any success? It seems like from what I have read on this forum, the results are not as positive with aspirin.
FYI - I bought some aspirin last week and have been taking 325 mg daily. Hard to tell if it has had any affect. I am assuming it would take a little while to get the whole system back on track.
Thanks
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I know, i'm replying to my own post. That's ok, I talk to myself all the time ;<)
I forgot to ask, there was another drug that people were taking that was supposed to help with the fatigue and aching. I can't remember what the names was?
Currently I am on Aspirin only, my Hughes/APS is particularly awful in pregnancy and afterwards, however this does not mean I won't need something else in the future, I am also on LDN which is suiting me as Plaquenil did not. If I start having bad TIA's again I am sure I will be upgraded to more medication. However it is many years now since I have had any actual clots. Please make sure you are referred to somebody who fully understands the disease, we have a list of UK recommendations on the charity website, if not in the UK others can guide you. MaryF
The Aspirin had effect on me but I only took Baby-Aspirin of 75 mg the first years. Then the doctors doubled the dose to 160 mg of Aspirin. That had no effect on me.
After Hyperparathyreidois-operation I had the symptoms back and also much worse later on also. At last I understood that I had Hughes Syndrome after reading "Sticky Blood Explained" which you have got also.
I then started warfarin and most of my neurological symptoms disappeared.
But as Mary says; see to it that you are reffered to someone who fully understands this illness!!!
If you are prescribed aspirin for clotting it is usually the low dose form. I would check with your haematologist or other specialist rather than self dosing. The low dose aspirin varies between 75mg and 100mg depending on which country you are in. If your specialist gives you the okay then its best to choose an enteric coated aspirin as that is gentler on your stomach.
Plaquenil is the other drug you were asking about.
Aspirin and warfarin work in different ways and everyone's needs are different.
I am on "baby aspirin" (75mg) per day, and it has gotten rid of all my symptoms. I know this is not common, but works for me.
Asprin didn't stop me from having a heart attack, now on Warfarin. When I asked about my son ?? Should he take Asprin just in case, he hasn't got Hughes syndrome I was told that Asprin can do more harm than good and that was at St Thomas's
I didn't ask why but ?? Stomach problems.
Make sure you see someone that knows .
325mgs I a very large dose in my opinion, I am no expert, please make sure that you take it on a full stomach.
Don't do it!!! (I lurk, don't often post - but I can't ignore this!)
I am pretty sure that is much too high a dose to be taking regularly. (Dose I was recommended just for short haul flights - long haul was fragmin injections)
Aspirin can damage the stomach lining, cause stomach bleeding. Self medication at that level could also cause problems if you had an accident - paramedics/doctors would not know you had taken it - and you might not be able to tell them! When I was pregnant I took 75mg Aspirin (and fragmin injections) - they were more concerned about aspirin and postpartum bleeding than the fragmin!
I now test negative for APS and have done for years. I was on 75mg Aspirin for 15+yrs with no clotting problems until had a minor DVT earlier this year and now back on warfarin.
A year or so ago I had a mystery pain - possibly stomach related (never found out what it was) and went onto clopdigrel which is similar to aspirin but safer on the stomach. I had also been on omniprazole/lansoprazole (proton pump inhibitors - reduces stomach acid) for a few years . Even after a few months on the clopidgrel I couldn't stop taking the other medicine without problems - so I went back on the aspirin (cheaper for the NHS and long term effects better known!) I should also say that I used to buy my own aspirin as it was cheaper than paying for a prescription - now in Scotland with free prescriptions I carried on buying it because it wasn't expensive and less hassle than a prescription. Then the GP insisted I started getting it on prescription as then they knew I was definitely still taking it - and that was 75mg!
By the time of my clot in July I was taking 2 (x30mg- I think) lansprazole a day - now I'm back down to one. (Might try and stop it altogether after Christmas.)
You need to find a GP who understands APS , get a proper diagnosis - if you insist on the aspirin in the short term stick to 75mg....and carry something with you that says you are taking it.
Lucky67: You tested positive for APS then subsequently tested negative for YEARS? That would defined as remission with some diseases. I was unaware that this could happen with APS. Did I understand you right?...Danny
I just got back from seeiing my hematologist at Duke. Even thoughh I was strongly positive IGg nd ANA 15 years ago since going gluten free in 2000 my blood work has been, in his words, "boring." He wants me off warfarin. But since the warfarin pushed the "stop" button on my mini strokes from 2000 I am reluctant to comply. I did try reducing my INR earlier this autumn but had a powerful "panic attack" whichh I now, after MRIS were taken in 2000, know are mini strokes. I am again, reluctant to go off warfarin.
But the Duke hematologist is confident that I am APS free now. Wish I shared his confidence.
What great news. Some have commented that APS is permanent. I always wondered if the Gluten free diet would alleviate some problems. I have been told that my excessive weight contributes to the SYMPTOMS too. Thanks again.
It is quite possible to be Sero negative or go through a period of negative testing, where it does not show up in the blood, the disease does not go away. MaryF
Hi i had a clot in the eye, no symptoms. After testing diagnosed with APS. On asprin 75mg but my GP changed to Clopidogrel 75mg. GP advised that Clopidogrel is better for blood thinning.
Could you please tell me how you observed that clot if you had no symptoms?
I have had a lot of neurological symptons regarding eye and brain. I am on warfarin an one eye-doctor told me that I had to be careful so I did not have a clot in my eye. I have had no clot.
I actually went to my local Boots opticians in the UK, to buy a new pair of glasses. They first did an eye test and a digital retina photograph. This extra test last year was £10, but now is standard with Boots eye test. The Photograph showed clot, and they rang local hospital . Next day at the eye clinic did various blood tests; could not understand why clot occurred. Passed me on to a blood specialist, who tested for all 3 APS tests. Hospital tested for aCl and LA but not anti-B2GP1. That was a very high reading. 8 weeks later 2nd test a higher reading occurred. Doctor was unsure to put me on warfarin as blood pressure and weight good. So advised to go on aspirin 75 mg and hope for the best. He advised any symptoms of clotting around the body go immediately onto warfarin. GP has put me on clopidogrel 75mg as he advised better than aspirin.
That was really a good Opticians who made all aware of your APS! Now you have a diagnose. That is good to know what it is so you can protect yourself.
It sounds if you have been taken care of exstremely well. Was the Eye red at that incident with the clot? Was it in one Eye, could they see that?
I have had microembolies. I could not see on one Eye for some minute. I had doublevision very often and had difficulties to read. I got tired when I moved my eyes.I was then on baby-Aspirin 75 mg. After warfarin no more.
Wrong. I was on the double dose of Aspirin, 160 mg here in Sweden, when i felt worse and had those symptoms I did mention, just before I startged warfarin.
To double the dose did not have any affect on me.Warfarin did.
Clot was in one eye. The picture of the retina showed the clots. However, i had no redness or any other symptom. Clot occurred in one eye. The clot was at the back of the eye. Note both the optician and eye consultant assumed that i must have had some eye vision issue.
Good to hear that warfarin has fixed your eye issue.
Thanks for the replies. Yes I did have a DVT just about a year ago. I was put on warfarin for that and it seems as an additonal result, I had no bouts of some sort of immune system problem I have been battling with for a very long time while I was on it. I am in the process of getting tests for APS, but that will probably take a while. In the mean time, I am fairly desperate to get my health back on track any way possible. I figured for a short duration I could take aspirin to see if that had any benefit as it is over the counter. It seems aspirin potentially has more negatives than I was aware of.
WIsh me luck at the DR's. I always seem to chicken out and walk out of an appointment with no direction. I am going to be more insistent this time and see if we can get to the bottom of things.
Please let us know how you get on, I have found it best if I write a list of what I want to ask, so I don't have to be thinking of the next question to ask I check the list before I leave the Doctor to make sure if have the answers
So, reading the post above on Aspirin and excessive bleeding/stomach damage...wondering now if I should be concerned that I am currently taking 40 mg lovenox and one full dose aspirin (325 mg) daily while treating infertility? I have been am on that regimen now for the past 4-5 months while getting several embryo transfers...is 325 too much?
I went to Duke to have my hip replaced presicely because my research said that they were one of the hospitals experienced in treating APS.ss And part of my issues with them, I'm sure,, is the missing blood work from my mini stroke/pre-diagnosis days. All he knows is wh
OK! No I do not like this latest version of the sie! Anyway -- all he knows is what I say I remember. But what I know is that my cadiolipin Ig G #s were very high, wih ANA IgM and IgA only "moderately high." And all my sympoms stopped when I was put on warfarin. I had, franky, not expected the warfarin to work -- but it did. Almost magically! Like a symtom off buttton. So no I am not eager to stop warfarin and have joked (?) that if I have to I will install a grow light in my den and grow my own curare.
To be fair the Duke hematologist is concerned that my chances of bleeding out on warfarin increase as I age. "Do you want to live to or past age 70?" he repeatedly asked me.
Well, yes of course, but I also want to live TO age 70 --- and not as a nursinghome basket case laid low by another mini stroke. I already can not use bifocals due to visual cortex damage; my sense of smell has been rotten since 2000,and I am heavily reliant on my smart phone to hold message, appoinments, to-do lists, etc.
Up until my first visit to Duke I had always understood that once a titer is positive as an indicator of an autoimmune condition, that even if that titer drops to normal, you may be more healthty, but you will always have the condition.
No, there seems to be a new interpretation that turns that concept on its head ----- at least as far as APS is concerned.
And thanks for the warning --- I may try to lower my INR later in the winter to see how I tolerate a lower INR (though I am already stable at a comparatively lowdose of 2-2.5) , but -- going off cold turkey? No. No. No. Too scary.
OK! No I do not like this latest version of the sie! Anyway -- all he knows is what I say I remember. But what I know is that my cadiolipin Ig G #s were very high, wih ANA IgM and IgA only "moderately high." And all my sympoms stopped when I was put on warfarin. I had, franky, not expected the warfarin to work -- but it did. Almost magically! Like a symtom off buttton. So no I am not eager to stop warfarin and have joked (?) that if I have to I will install a grow light in my den and grow my own curare.
To be fair the Duke hematologist is concerned that my chances of bleeding out on warfarin increase as I age. "Do you want to live to or past age 70?" he repeatedly asked me.
Well, yes of course, but I also want to live TO age 70 --- and not as a nursinghome basket case laid low by another mini stroke. I already can not use bifocals due to visual cortex damage; my sense of smell has been rotten since 2000,and I am heavily reliant on my smart phone to hold message, appoinments, to-do lists, etc.
Up until my first visit to Duke I had always understood that once a titer is positive as an indicator of an autoimmune condition, that even if that titer drops to normal, you may be more healthty, but you will always have the condition.
No, there seems to be a new interpretation that turns that concept on its head ----- at least as far as APS is concerned.
And thanks for the warning --- I may try to lower my INR later in the winter to see how I tolerate a lower INR (though I am already stable at a comparatively lowdose of 2-2.5) , but -- going off cold turkey? No. No. No. Too scary.
I have had medium/high and very high antibodies of a all sorts (tested twice a year) for 12 years now. My CRP is NEGATIVE. Do I have a high amount of inflammation?
If I listen to you here several of you seem to feel much worse than I do.
I've been taking whole aspirin, but coated, just because I'm short of funds and it is so much cheaper. They do tell me I'm taking too much, but it helps for my headaches better than codiene or ibuprophen.
To me it's a little funny, because when I first got sick, I was moving around a lot and didn't have a regular doctor, and I took 2 aspirin every four hours just to survive the pain I was in. I think it was before they had even discovered the other NSAIDs. This lasted for at least 5 years, before I found a doc who tried me on other NSAIDs. Finally, I was put on plaquinil, which I think was a miracle back then because I didn't have positive blood tests for lupus. Also, a miracle because it worked!
I'm not sure if I'm diagnosed with APS now, but whatever, they won't put me on warferin, because "too dangerous." (I think the memory neurologist admitted it might be the case since I have another antiphospholipid antibody called antimylen igg, but not MS.)
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